Highly Sensitive Person and Autism

Sounds all too familiar.  I have spent half a lifetime in the self help aisles of bookshops and much of this has been focussed on anxiety, introversion and, more recently being a HSP.  I related very strongly to this and thought I'd finally discovered the truth about myself.  But no, I was autistic all along.  

As I now see it, I'm not a HSP as well as autistic.  Autistic covers it all.  This is something that many have noticed and there used to be a detailed (but I thought rather wishy-washy) rebuttal of them being the same thing on Elaine Aron's website.  I've just looked and it's recently been changed to read:

"Autistic diagnoses can be complex and dynamic. This area is not Elaine’s specialty, and she does not keep up on current research. This topic deserves accuracy and respect. Therefore, we advise those looking for more information to seek out autism experts. Just be certain they understand something about innate temperaments such as high sensitivity as well."

Either way, she distances herself from the subject and I suspect that's because it kept cropping up and the difference wasn't that clear.  

I would say that high sensitivity is one of our core traits, leastways in my family, and it's something that just doesn't yet feature in the DSM (assuming that publication to have any worth or validity).   I think it's central though, and that in time the huge overlap is bound to be clarified.  

I have to admit to having similar thoughts about extreme anxiety.  Mine was always associated with sensitivity and I went through various rounds of therapy and courses with Anxiety UK to try to help.  Nobody EVER mentioned autism and I'm not sure whether it's mentioned even now on the Anxiety UK website.  Perhaps if it had been, or if it had appeared in any of the many books I read about anxiety, I would have been at least able to self identify before the age of 55!  

To me it feels as though too many organisations and individuals working within the self help sector just ignore the possibility of autism and this can reinforce the barriers to people understanding their own identity.  Given the quite severe consequences within my family, I feel quite angry about this.  

I've spent my life in the self help aisle too, lol!

I personally think that human brains are soooooooo complicated that it's going to take many more decades for scientists and doctors to work us out. That is if we don't end ourselves before that.

There are probably more conditions than we know about now and they must be interrelated. But how...

Is the DSM the American text book?

Well yes, it is American.  However, it's still widely used in the UK and they certainly used the criteria when I was diagnosed a couple of years ago.  My preference would have been for my difference to be identified and accommodated in childhood and I feel a bit negative about what I consider to be important aspects of myself to come under a diagnosis.    Plus I ended up getting a few unnecessary diagnoses due to the general ignorance about autism and so much being ascribed to something else.

All of the HSP stuff certainly threw me off the scent and prevented me from understanding my identity for years.   

Many thanks.  I've spoken to a number of people about this and there's apparently little that can be done other than what we're already doing.   

I'd really like advice and guidance (not counselling) from an autistic practitioner with a lot of experience working with families and young adults.  Someone who is prepared to work with the parents rather than the young adults who won't engage anyway, so this probably means it wouldn't work because of issues around confidentiality and autonomy.    

It all sounds awful and familiar about how university went in the 1980s for me.

I hope you find some help somewhere for all this, I'm not sure what I can say or do to help, apart from listen  

Both male.  Both highly intelligent and meeting all their targets academically.  But my own lack of identification and support probably related to me being female and masking from a  very early age.  It never felt safe enough to just be myself out there.  

My dad had lifelong problems, including a major breakdown/burnout that lasted for years and utterly blighted our teenage years with no help or support other than massive diazepam tablets (unlike the tiny ones they dole out these days) that made him sleep half of his life away.  And, when we saw various MH professionals in connection withour sons, they specifically asked about family background.  I didn't hold back.  Yet still, autism wasn't mentioned. 

Generic, one-size-fits-all therapy was offered plus an increasing range of psychiatric drugs that didn't work but caused massive weight gain (with an obvious associated dent to ideas of self worth and self esteem for a young man just starting out) and this pattern lasted for nearly 4 years.  They then discharged us on the basis that there was no evidence of mental illness, only autism.  The autism team to which they referred us was just a diagnostic service though, and unable to offer any help to parents of adults.  After all of their negative experiences, my sons now won't engage with services at all.  So it's down to us.  

For those who don't get family help when their kids are under 18, I honestly don't know where we're supposed to turn.   We are stuck.  

And yes, university in the 80s was a bad experience for me too.  I passed all the exams with flying colours but, given my family background (incl. extreme isolation throughout my teenage years because of our dad's poor health), I couldn't cope socially and nearly drank myself to death over the 4 year course.  And, to cap it all, got blamed for my behaviours.  Then started work unequipped to deal with basic stuff like answering phones or attending meetings or even just exchanging pleasantries with others in the office.  

If anything, though, my sons' experiences have been even worse.  Imagine doing a psychology (!) degree at a prestigious university, not being able to cope with socialising, attending tutorials, arranging meetings with tutors and getting work in on time and just getting blamed for it instead of helped.  Nobody sees the struggle, everybody pulls you up for not participating fully or not dealing with issues of which you have little knowledge because the magic word (autism) hasn't been broached.    So your attendence falls, so does your performance and you take more than one gap year, miss exams and have to appeal to get back on the course.  Then fail again and eventually leave with very little apart from debt.  At least my course was fully funded via the council grant system.  Now student loans are pursuing us for an overpayment too.  But i've spent most of our money of getting private help because NHS waits were too long once we'd finally realised that we're autistic but needed some corroboration.  

Try as I might, I don't know where to get help with any of this.  They either provide services for the under 25s (our youngest age of diagnosis is 26) and/or they suggest waiting until the person themselves is willing/able to engage.  That'll be a long wait then.   They don't deal with parents.  :(  

That is a terrible situation, unbelievable that no one mentioned autism. I'm really sorry you have to cope with all that, it's extremely difficult when you get zero help. It sounds like me when I went to university in fact. I was okay at school but when I was miles from home and family, struggling to cope with new situations, new people, new emotions, I had a complete meltdown and fell apart.

I hoped that the situation for students in education had improved since then (I went to university in the 1980s) but it seems not!

Are your children male or female? I feel like people used to think autism didn't affect females, it's only recently they've accepted that it does. And not everyone accepts it. There is a page on NAS discussing how autism in girls is still not accepted by major organisations. So maybe you were unlucky that you met the people who don't believe autism exists in females. That doesn't help but it sounds like what happened.

You'd have to ask the people running the HSP websites why they don't mention autism, that's beyond my knowledge of it.

Yes, much seems to depend on luck.  In our case nobody mentioned autism, in spite of me expressing concerns about all round/social development more than once with different teachers.  And, in my own case, I went through several rounds of therapy and even trained as a counsellor myself - not one of my tutors nor peer group ever raised the possibility of neurodivergence. 

Now I have 2 adults in their 20s with quite severe issues and nobody can help us.  Severe, chronic burnout, extreme rage (some of this at not being identified earlier on, when it might have made more of a difference), EF difficulties, little to no engagement with services or indeed anything outside the home, and on and on.  Most of these issues only became severe during attempted transitions to college and university and, even there, there was no insight or help.  

And, in the middle of all of these gradually, then suddenly explosive issues (needing the involvement of utterly useless crisis teams and MH teams who, again, failed to identify autism), there was I, doing my utmost to build upon what I'd already learnt about anxiety, depression, psychosis and highly sensitive people plus using my counselling skills to try to create a calm, empathic and nurturing home.  I can't say that none of this helped, or maybe prevented things from becoming even worse (we're still alive, after all, although sometimes this surprises me, given the enormity of what's happened).  But all the time we needed to hear one word - autism!  And I really wish that websites and other resources focussing on HSP and high anxiety in particular would include information about autism.  To my mind there's too much of an overlap for them to ethically exclude it.  :(    

Yes, much seems to depend on luck.  In our case nobody mentioned autism, in spite of me expressing concerns about all round/social development more than once with different teachers.  And, in my own case, I went through several rounds of therapy and even trained as a counsellor myself - not one of my tutors nor peer group ever raised the possibility of neurodivergence. 

Now I have 2 adults in their 20s with quite severe issues and nobody can help us.  Severe, chronic burnout, extreme rage (some of this at not being identified earlier on, when it might have made more of a difference), EF difficulties, little to no engagement with services or indeed anything outside the home, and on and on.  Most of these issues only became severe during attempted transitions to college and university and, even there, there was no insight or help.  

And, in the middle of all of these gradually, then suddenly explosive issues (needing the involvement of utterly useless crisis teams and MH teams who, again, failed to identify autism), there was I, doing my utmost to build upon what I'd already learnt about anxiety, depression, psychosis and highly sensitive people plus using my counselling skills to try to create a calm, empathic and nurturing home.  I can't say that none of this helped, or maybe prevented things from becoming even worse (we're still alive, after all, although sometimes this surprises me, given the enormity of what's happened).  But all the time we needed to hear one word - autism!  And I really wish that websites and other resources focussing on HSP and high anxiety in particular would include information about autism.  To my mind there's too much of an overlap for them to ethically exclude it.  :(    

Many thanks.  I've spoken to a number of people about this and there's apparently little that can be done other than what we're already doing.   

I'd really like advice and guidance (not counselling) from an autistic practitioner with a lot of experience working with families and young adults.  Someone who is prepared to work with the parents rather than the young adults who won't engage anyway, so this probably means it wouldn't work because of issues around confidentiality and autonomy.    

It all sounds awful and familiar about how university went in the 1980s for me.

I hope you find some help somewhere for all this, I'm not sure what I can say or do to help, apart from listen  

Both male.  Both highly intelligent and meeting all their targets academically.  But my own lack of identification and support probably related to me being female and masking from a  very early age.  It never felt safe enough to just be myself out there.  

My dad had lifelong problems, including a major breakdown/burnout that lasted for years and utterly blighted our teenage years with no help or support other than massive diazepam tablets (unlike the tiny ones they dole out these days) that made him sleep half of his life away.  And, when we saw various MH professionals in connection withour sons, they specifically asked about family background.  I didn't hold back.  Yet still, autism wasn't mentioned. 

Generic, one-size-fits-all therapy was offered plus an increasing range of psychiatric drugs that didn't work but caused massive weight gain (with an obvious associated dent to ideas of self worth and self esteem for a young man just starting out) and this pattern lasted for nearly 4 years.  They then discharged us on the basis that there was no evidence of mental illness, only autism.  The autism team to which they referred us was just a diagnostic service though, and unable to offer any help to parents of adults.  After all of their negative experiences, my sons now won't engage with services at all.  So it's down to us.  

For those who don't get family help when their kids are under 18, I honestly don't know where we're supposed to turn.   We are stuck.  

And yes, university in the 80s was a bad experience for me too.  I passed all the exams with flying colours but, given my family background (incl. extreme isolation throughout my teenage years because of our dad's poor health), I couldn't cope socially and nearly drank myself to death over the 4 year course.  And, to cap it all, got blamed for my behaviours.  Then started work unequipped to deal with basic stuff like answering phones or attending meetings or even just exchanging pleasantries with others in the office.  

If anything, though, my sons' experiences have been even worse.  Imagine doing a psychology (!) degree at a prestigious university, not being able to cope with socialising, attending tutorials, arranging meetings with tutors and getting work in on time and just getting blamed for it instead of helped.  Nobody sees the struggle, everybody pulls you up for not participating fully or not dealing with issues of which you have little knowledge because the magic word (autism) hasn't been broached.    So your attendence falls, so does your performance and you take more than one gap year, miss exams and have to appeal to get back on the course.  Then fail again and eventually leave with very little apart from debt.  At least my course was fully funded via the council grant system.  Now student loans are pursuing us for an overpayment too.  But i've spent most of our money of getting private help because NHS waits were too long once we'd finally realised that we're autistic but needed some corroboration.  

Try as I might, I don't know where to get help with any of this.  They either provide services for the under 25s (our youngest age of diagnosis is 26) and/or they suggest waiting until the person themselves is willing/able to engage.  That'll be a long wait then.   They don't deal with parents.  :(  

That is a terrible situation, unbelievable that no one mentioned autism. I'm really sorry you have to cope with all that, it's extremely difficult when you get zero help. It sounds like me when I went to university in fact. I was okay at school but when I was miles from home and family, struggling to cope with new situations, new people, new emotions, I had a complete meltdown and fell apart.

I hoped that the situation for students in education had improved since then (I went to university in the 1980s) but it seems not!

Are your children male or female? I feel like people used to think autism didn't affect females, it's only recently they've accepted that it does. And not everyone accepts it. There is a page on NAS discussing how autism in girls is still not accepted by major organisations. So maybe you were unlucky that you met the people who don't believe autism exists in females. That doesn't help but it sounds like what happened.

You'd have to ask the people running the HSP websites why they don't mention autism, that's beyond my knowledge of it.